Across the Atlantic

Madere Olivar is a good friend of mine based in the USA who regularly contributes her time, up to date knowledge and experience to The AVM survivors Network, she has very kindly agreed to regularly share her thoughts with us in our “Across the Atlantic” section. Thank you Madere x

Entry One: My Son’s Story

I would like to introduce myself and explain how I came to be apart of the AVM community. My son John’s AVM revealed itself slowly and in stages. When John was six or seven, we noticed an irregularly shaped shadow on his forehead that wouldn’t wash off. It hung around for months until we decided it must be a birthmark. A couple of years later, a small circular growth slowly appeared below the shadow, in the corner of my son’s right eyebrow. It was mildly puzzling but seemed harmless. We pointed it out to our son’s pediatrician, but he didn’t think much of it; perhaps it was a cyst. When our son turned 10, the cyst grew a little larger, and we took our first trip to a hospital to consult a plastic surgeon. As so often happens with peripheral AVMs, this doctor missed the diagnosis. He ordered a CT scan and sent a report back to my son’s pediatrician with a single word: “Normal.” Two more years went by, my son turned 12, and the “normal” growth on his forehead grew a little more, while the shadow above it started to look as if it were swelling. When a friend commented on it and said “we should get it checked out,” we picked another hospital (a very prestigious one) and another plastic surgeon. By the time of our appointment five months later, the growth on my son’s forehead was beginning to redden, and he was losing some of the hairs on his eyebrow. This plastic surgeon told us that our son probably had a vascular malformation rather than a cyst, and he referred us to a colleague who was an interventional radiologist. Three months passed before the interventional radiologist held up a stethoscope to my son’s forehead and heard a pulse where no pulse should be. For the first time, we heard the letters “AVM”.

Fortunately, we were able to see our new doctors the same day. After an ultrasound, they confirmed that our son had an arteriovenous malformation. They seemed pleased, even excited, and spoke very soothingly with frequent smiles. These doctors appeared to be experts fully in control of our situation. I now believe they belonged to that middle tier of doctors so dangerous to peripheral AVM patients, those who have enough knowledge and expertise to treat AVMs but not enough to treat them optimally. These doctors allowed us to believe that our son’s AVM was a mere cosmetic nuisance that could be ignored or treated at our convenience. The treatment, we were told, was embolizing the malformation with superglue to cut off its blood supply. The doctors expressed no hesitations and offered no alternatives. An arteriogram and embolization were scheduled for June, one month before my son turned 13. We believed, wrongly, that the embolization would be curative. We were not told that it might blind our son or cause a stroke. After the embolization, which fortunately was performed without complications, the doctors told us excitedly that it had been a complete success. They had “closed off the main flow” but left two smaller feeders open. My husband and I wondered why, but we were so relieved the procedure was over that we didn’t ask questions. We scheduled a follow-up appointment six months later.

By the follow-up appointment, it was apparent to us that our son’s AVM had not really improved. He has beginning to get regular questions from friends and classmates about his forehead and was becoming self-conscious. The doctors performed another ultrasound and showed us that the “main flow” was still blocked by the embolization. They said they would see us again in another six months, and then, if we felt like it, we could have the AVM resected.

My son was very active at the time, dancing more than 15 hours per week, and I began to notice that after dance classes, his AVM was enlarging. It also seemed to be growing downward toward his eye. I phoned up our doctors in February, one month after the follow-up, and said I didn’t think we should wait to remove the AVM, as I didn’t like the way it was changing. They referred us to a plastic surgeon considered to be “the AVM guy” at their hospital. The day we spoke to the surgeon was the day the alarm bells began to ring. The surgeon proposed making an incision all the way across my son’s scalp and folding down the skin of his forehead to access the AVM. He said it was possible our son’s eyebrow would be paralyzed and he might have a large depression in his forehead. When we asked why such an extreme surgery was proposed, he said it was important to get he whole AVM, or it would come back.

That night I began researching in earnest and discovered many facts about facial AVMs that had never been divulged to us: that they could progress to the point of disfigurement, ulceration, and chronic pain; that they resisted destruction in every way possible; and that there was no consensus on the best course of treatment. I confess I was absolutely horrorstruck. It was like thinking my son had appendicitis and then finding out we were actually dealing with stomach cancer. I spent two weeks obsessively searching for information about facial AVMs. I discovered, where I read every single relevant profile I could find. I read article after article from scientific journals, all of which seemed to indicate that the embolization performed on my son would not only fail to cure his AVM but would probably make it worse. I also found online a couple of parents whose kids had been dealing with facial AVMs for years and who had finally been cured by a Dr. Suen from Little Rock, Arkansas. They gave me his contact information, and I sent a tentative email with some digital photos attached. Dr. Suen replied the same day. He told me that the surgery proposed by our previous doctors would not in his opinion cure my son’s AVM. Within a month, we were in Little Rock, and my son’s AVM, which was now thumb-sized, was removed by Dr. Suen in a four-hour surgery. Dr. Suen is reasonably sure he got it all. Six months later, there is no sign of recurrence, and we hope that all my son will have to remember his AVM is a scar and a story. I am fully aware that, up to this point at least, our experience has been easier than most. My son may be AVM free, but I cannot be complacent knowing that other children are still living under the shadow of these insidious malformations. Information made an enormous difference to our son, so now I offer information to others in the hopes of improving their care and prognosis. Unfortunately, with AVMs, sometimes information isn’t enough. We need research, and we need a cure.

Madere Olivar


Happy Graduation, Hiro!

AVM Survivor Hiro just reached a very important milestone this week: college graduation. For Hiro, graduating represents a special victory.  When Hiro was twenty-one years old and a full-time college student, she had an unexplained grand mal seizure. After her doctor ordered a CT, Hiro learned that she had a frontal lobe AVM.  After experiencing additional seizures, Hiro had a craniotomy at Johns Hopkins in December 2011, where not one but three AVMs were found and removed. After surgery, Hiro took a month and half to recover at home “with the aid of my mother and yoga.”  Amazingly, she was able to return to school for the spring semester.  But surgery left Hiro with an array of challenges: side effects from anticonvulsants, anxiety and depression, mood swings, attentional and executive functioning difficulties, and fatigue. “I have been diagnosed with sleep disorder (idiopathic hypersomnolence), and my anxiety disorder also triggers ‘stress gait disorder’ and ‘non-epileptic seizure disorder.’  I sometimes experience language issues, including lisping, word retrieval, code-switching, and rambling, along with fairly bad memory problems that make it necessary for me to write practically everything down, have a Google Calendar that syncs to all of my devices, and have to-do lists for everything.” “To me, ‘playing normal’ was what kept me ‘sane.’ I kept going to school, kept doing work, and kept going from day to day smiling and talking, playing a ‘healthy person.’”

“As walking to class became difficult, eating became difficult, and doing work became difficult, I had to change my ways slightly, but I made the decision to not take the semester off after surgery and come back, because I could not stand the thought of being at home, brooding over everything I was not doing that I could be doing or my life.” Hiro has not only remained positive; she has put her graphic design skills to create infographics, handouts, and stickers for AVM awareness ( and, developed a Mid-Atlantic support group ( with her friend Molly, and started a website for AVMs ( with research links to help AVM patients better understand their condition. Now that she has graduated, she hopes to obtain a Master’s degree in Education and become a Special Education teacher. Hiro also uses blogging to stay motivated and to inspire others.  I was quite struck by a quotation I found on her blog, by George Bernard Shaw:

I want to be thoroughly used up when I die, for the harder I work, the more I live. I rejoice in life for its own sake. Life is no ‘brief candle’ to me. It is a sort of splendid torch which I have got hold of for the moment; and I want to make it burn as brightly as possible before handing it on to future generations, congratulations, Hiro!  We raise our torches to you!  You are now educated, in more ways than one.


Glue is supposed to hold things together !

Glue is supposed to hold things together, but what if it makes everything fall apart?

This is the story of Maria, a woman with a forehead AVM who came to AVMSurvivors after an embolization with NBCA glue left her with an alarmingly swollen forehead and other disturbing symptoms, such as fatigue, nerve pain, burning, itching, and light headedness. A dedicated runner before her embolization, Maria couldn’t understand why she felt so ill afterwards. She broke out in hives. She spent more and more time on the couch and stopped running.

This is the story of Maria, a woman with a forehead AVM who came to AVMSurvivors after an embolization with NBCA glue left her with an alarmingly swollen forehead and other disturbing symptoms, such as fatigue, nerve pain, burning, itching, and light headedness. A dedicated runner before her embolization, Maria couldn’t understand why she felt so ill afterwards. She broke out in hives. She spent more and more time on the couch and stopped running.

Maria’s interventional radiologist had filled her AVM with NBCA, hoping that this would be a definitive treatment, and that no surgery would be required. Just like my son, Maria was asked to return six months after embolization for a follow-up appointment. This is a protocol that many interventional radiologists continue to follow, but it is not a good one, as it allows ample time for an AVM to recanalize and regrow.  Maria’s AVM was not regrowing, but she was getting sicker.  She suspected she was allergic to the glue.

Maria sought out the help of an allergist, who ran some blood tests (which were negative), gave her some medications, and concluded that she was having a mast cell reaction, though it was probably “not chronic.” Essentially, he agreed that she was allergic to something, but oddly enough, he did not believe that the NBCA was causing it.  He recommended against surgery to remove the glue, a recommendation that neither Maria nor I understood.  It seemed clear to both of us that since her allergic symptoms occurred immediately after the NBCA was put into her body, the NBCA was responsible and should be removed. If it looks like a duck and a quack like a duck, then it’s a duck, right? The problem was that this particular duck was not in any of the literature about NBCA embolizations, so Maria’s doctors doubted its existence.

Reflecting on her situation, Maria remarked:

“It has been nine weeks since I had my forehead AVM embolized. I can’t believe how messed up my life got from something that was supposed to be so easy. Typically I research everything to the finest detail before proceeding, but for some reason this time I didn’t.  I hit it off with my neuro interventional radiologist right from the start and just went along with his plan to see if he could treat the AVM without resection. Why not try the least invasive plan first?”

I encouraged Maria to get in touch with Dr. Suen as soon as possible, and she did.  He immediately concluded that she was reacting to the NBCA and recommended that she have surgery as soon as possible to remove the glue.  Maria decided to go to Little Rock, though it meant travelling 1,000 miles from home.  Three months after her embolization, Dr. Suen removed the glue from her forehead.

Though Maria now bears a couple of scars from the resection, she is feeling much better and is thrilled to be AVM free.  “I now have a flat forehead for the first time in thirty years!” she says.  Even better, all of her allergy symptoms are gone.

Maria’s case is quite unique.  She was something of a celebrity at UAMS, visited by many doctors curious to have a look at an NBCA-allergic patient. In addition, Dr. Suen will be speaking about her next week at the Fourth International Symposium on Hemangiomas and Vascular Malformations of the Head at UAMS.  But what is not unique to Maria’s story is the importance of self-advocacy and, quite often, the need to ignore the advice of less experienced doctors and get to a real expert in vascular anomalies to receive the best care and get the best possible outcome.  Now that the glue is out, hopefully Maria will be “up and running” again soon.

Though an active brain AVM can theoretically become symptomatic at any time, there are certain patterns to be observed in AVMers’ stories of how they experienced their first significant AVM event, whether it was a blinding headache, a seizure, a bleed or a rupture. Athletes have reported ruptures during intensive workouts.  Couch potatoes have reported AVM attacks from carrying unaccustomed heavy loads or having heated arguments with spouses.  Many have experience bleeds after they were asleep for many hours, when the heart suddenly begins working harder to pump blood because the body has been at rest through the night.  And then, there are the stories from the heavy partiers: the 21st birthday seizures, after alcohol or drug binges.

“Monztrrr” knows all about the dangers of heavy partying.  Blissfully unaware of a seven centimeter AVM spanning his right occipital and parietal lobes, he worked out, partied, stayed out at all hours, and skipped sleeping when he felt like it.  Though he once experienced convulsions at age 18 after a 24-hour alcohol binge, he shrugged it off and continued living dangerously for seven more years until in 2011 he had a seizure that was severe enough to send him to the hospital, where the AVM was discovered.

I wanted to interview Monztrrr for a couple of reasons.  First, I confess a certain fascination with his Sid Vicious lifestyle, and I wanted to know how he was handling all the restrictions on that lifestyle that come with an AVM diagnosis.  But secondly, Monztrrr mentioned that he had some unusual extrasensory abilities that he attributed to the AVM.  This is no the first time someone has reported unusually enhanced mental powers of one kind or another with an AVM, and I wanted to learn more:

Is your AVM currently untreated?

Yes, the doctor said it was pretty much inoperable due to size and location. As far as treatment goes, I wasn’t offered any. Embolization was out of the question, I guess. How difficult was it to handle the idea that you have a large AVM in your brain? It wasn’t difficult because I didn’t pay any mind to it.  Maybe I just didn’t grasp the concept of it being something really serious.  The doctors tried to scare me with the “ticking time bomb” line, but I don’t easily believe everything I hear. Are you able to work?  What kind of work do you do? I am an artist and music producer.  I own a recording studio, and I have a bachelor’s degree in marketing and business development.  I do a little bit of freelance graphic design on the side just to pay the bills, but I don’t go to any office except my own.  I think I may have to work less.  Perhaps work is triggering my grand mal seizures. How has the diagnosis of your AVM changed your life?  What do you miss the most? After my hard core grand mal seizures came along, I had to make changes, which included no more partying, no more booze, no more raves, no more psychotropic drugs or any kind of drug for that matter.  If I miss anything, it would have to be the girls at parties.  The hunt made me feel so alive. Now I’m more or less monogamous, I’m sorry to say. Tell me about the seizures.

Before I was diagnosed, I guess I was having seizures without realizing it. I came home from a party once, and I woke up the next day with pee on me. And the headaches were unbearable; I attributed them to the booze. It’s a scary enough ordeal having a seizure and not knowing what the hell is going on.  I’m thinking about buying a football helmet and being helmet boy when my leg starts to go numb, so I don’t bang my head hard against the floor or walls as I have before.  I don’t want to get more messed up than I already am.

I started to feel numbness on my leg earlier tonight.  The episode lasted more than an hour, but I rode through it.  No more coca cola or pizza for me ever! I’m beginning to realize that the food I’m eating is trying to make my AVM angry, and it’s succeeding, apparently.  I’m scared enough to get a new diet; those damn seizures hurt! A couple of days ago, I heard knocking on the fence and went outside. I started to get a familiar tingling in my left leg, so I ran back to the house and got into bed.  I started partially seizing at first from my leg. Then it went up into my chest and arm.  I tried my hardest to control it, but it was to no avail. I felt my entire left side have the worst muscle cramp ever, and then my left hand and arm  turned completely in the opposite direction, kind of like the exorcist, and it HURT! To top it all off, I was fully conscious.  I stopped taking trileptal about a year ago, but this pain just made me go out and buy more med’s.  I’m afraid to feel that pain again; I was literally feeling like I was going to die.  It’s scary as hell, not to mention PAINFUL!

What is the first time you realized your mind worked differently from most peoples? I’ve always felt my mind was different.  Since I was a child, I always felt detached from my peers.  I can communicate very well with intelligent folk; I like to read and learn about almost any topic in the world unless it’s trivial. I can read, speak, and write fluently in English, French, Spanish, and a little Japanese.   Though I’m still learning it, I can speak it just as if I was born in Japan.

I taught myself how to play the guitar, piano, bass and drums. My IQ is 130.

I really don’t have a clue how I can have such a huge ball of blood pumping inside my head and still be able to do all of these things.  It was a shocker to find out.

Also, my dreams are so vivid that I can recall every little detail, sights, sounds and smells. When I wake up, I have to take a minute just to gather myself and remember that this is the waking world.  I don’t have 20/20 vision in real life, but in the dreamscape I do.  It’s almost like dreaming in high definition.

Sometimes I have déjà vu experiences.  I dream about things, and then they come true years later.  I can recall my dreams perfectly, so when I’m seeing something I saw in a dream, I remember it instantly; the memory is still there as fresh as the day I dreamt it, and it never fades or goes away.  Similarly, I can recall every detail when I’m having a grand mal seizure; that’s not so good, but remembering my dreams so vividly doesn’t bother me. If I don’t go out, it’s hard to feel a déjà vu because I’m not experiencing anything new or remarkable.   I usually don’t dream about home; instead, I go to other countries, different cities, and meet with different people.  It’s pretty weird when you have never been to a place, yet you’ve seen it before in your dream. After awhile, you kind of get used to it, but the strangeness never goesaway. Monztrrr was kind enough to share some of his music with me, and hissongs gave me my own déjà vu experience, catapulting me back to the Los Angeles punk clubs I frequented in high school in the early 80s, where the walls shook  from the pounding rhythms of bands like No Trend and

Social Distortion. Intuitively, the profile on his music-sharing webpage reads: “His eclectic style of music reminds you of many bands and songs.”  I found myself wondering: Isthere something extrasensory about Monztrrr’s music?

Do these songs come to him in dreams?

29/10/ 2012

Entry 2: Not-So-Innocent Birthmarks!

This blog tells the true story of a teen named Kayla and her wonderful mom Elizabeth.  When Kayla was ten years old, her left foot began to swell.  She saw several doctors, none of whom could explain it, though one doctor suggested that the problem was flat feet.  In August 2010, Kayla was diagnosed with a foot AVM and treated surgically. Unfortunately, the surgery was not a permanent solution, and Kayla continued to have pain and swelling in her foot and leg.  Seeking help, Elizabeth joined  I contacted Elizabeth in April 2012 to inquire how Kayla was doing, and we stayed in touch.  I am very thankful that we did, because together we unraveled a mystery and obtained an even more important diagnosis for Kayla.  Here’s how it happened.

Elizabeth had an instinct that something more was going on with Kayla than an AVM.  You see, Kayla had 43 birthmarks; doctors had examined them when she was an infant, but no doctor had ever been able to explain why she had so many and such different types. They told Elizabeth that they were “innocent birthmarks” and not to worry.  As Kayla reached adolescence, some of those birthmarks began to change in unusual ways.  Some were growing and rising above the skin.  New ones were appearing.  Elizabeth felt that there had to be a connection between these birthmarks and Kayla’s foot AVM, but Kayla’s doctors weren’t particularly motivated to find one.  So, Elizabeth posted a discussion on AVMSurvivors about the birthmarks, and I asked her to post pictures of them.  I wondered if they might be telangiectasias (a symptom of HHT), capillary malformations, or possibly hemangiomas.

Kayla’s birthmark photos were highly variable.  Some of the birthmarks I couldn’t quite identify; they were raised and looked a little like salmon patches, but not quite.  The others were café au lait spots: flat, tan-colored birthmarks with which I was very familiar, as they run in my own family. But none of us had as many as Kayla, and some of hers were quite large. I decided to look up café au lait spots on the Internet.  I had a vague memory of reading an article once that said if you had half a dozen café au laits or more, it could be a symptom of a disease.  As it turned out, the articles I found listed a number of conditions associated with a large number of café au lait birthmarks, but one condition fit Kayla’s symptoms better than the others: neurofibromatosis.

Neurofibromatosis is a genetic condition caused by a mutation in the

NF1 gene; these can cause the development of tumors (neurofibromas) on, or under the skin, on the spine, or in the brain.  It is a disease that has “variable expression,” meaning that some cases can be severe and others mild, which means that doctors have a difficult time diagnosing it. It is not curable at present, but can be managed.  Screening for the tumors is essential, because they can appear internally as well as on the skin and may need to be removed, especially as some may have the potential to become malignant.

It is a difficult thing to inform someone you know that you think their child might have a genetic disorder.  It is not the first time I have needed to do this, and I don’t believe it will be the last.  I am a parent, too.  I could empathize with Elizabeth and realize that I might cause her pain and anxiety by sharing my suspicions about Kayla’s condition. On the other hand, because I am a parent whose child has had an AVM, I understand very well that having a proper diagnosis is essential to getting the right care.  So, I held my breath and sent Elizabeth a message and some articles about neurofibromatosis and birthmarks, as well as an article discussing an association between neurofibromatosis and AVMs.  Elizabeth took the news very well; my suspicions made sense to her and corroborated her own feelings that Kayla had an undiagnosed, systemic condition.

It was apparent to me that Kayla’s family health insurance protocols impeded getting a diagnosis.  Elizabeth couldn’t just seek out doctors or make appointments on her own and have them covered by her insurance.  She couldn’t easily make an appointment at a center that specialized in neurofibromatosis and have Kayla tested, as there were no centers in her state.  Each doctor and appointment had to be approved by Kayla’s primary care physician, who was not particularly interested in Kayla’s birthmarks.  He dismissed the idea of neurofibromatosis and dismissed Elizabeth’s request for genetic testing.  I encouraged Elizabeth to select another primary care physician, which she did.  This one gave her referrals to a podiatrist (for the foot AVM), a dermatologist, and a neurosurgeon for Kayla.  He did not believe Kayla had neurofibromatosis, but he agreed that her condition should be investigated further.

The referral that finally resulted in a diagnosis for Kayla was actually an accident.  She was supposed to be sent to UCSF, but through a clerical error she was referred instead to Dr. Shaleish Asaikar, a neurologist in Sacramento.  Elizabeth realized that the referral was an error, but she learned that Dr. Asaikar was familiar with neurofibromatosis, so she kept the appointment regardless.  Had she not suspected neurofibromatosis, she would undoubtedly have cancelled it.  As soon as Dr. Asaikar saw Kayla’s cafe au lait marks, he immediately told Elizabeth that she had neurofibromatosis.  After a more thorough examination, he determined that Kayla had neurofibromatosis type 1.  Dr. Asaikar has scheduled MRIs for Kayla’s brain, spine, and lower extremities, which are yet to be performed.

A few days after the diagnosis, Elizabeth reported: “At this point, I am not even sure who I can trust any more as far as doctors go. She has seen so many doctors and been misdiagnosed, it is unreal. I plan to research and see who are good doctors for AVM and neurofibromatosis and then I will decide.  I don’t care how far we have to travel, I want to make sure she has the best care from this point on.”

What should we learn from Kayla’s experience?  We have to speak up, sometimes loudly and often, to get the right care.  That if we run into a brick wall in our healthcare system, we need to jump over it or bulldoze our way through it.  That the internet can be a valuable resource, and we should use it.  And, finally, that the most powerful ally for a sick child is often her mother.